Lack of evidence does not justify neglect: how can we address unmet medical needs in calciphylaxis?
Identifieur interne : 000011 ( PubMed/Corpus ); précédent : 000010; suivant : 000012Lack of evidence does not justify neglect: how can we address unmet medical needs in calciphylaxis?
Auteurs : Vincent M. Brandenburg ; Pieter Evenepoel ; Jürgen Floege ; David Goldsmith ; Rafael Kramann ; Ziad Massy ; Sandro Mazzaferro ; Leon J. Schurgers ; Smeeta Sinha ; Vicens Torregrosa ; Pablo Ure A-Torres ; Marc Vervloet ; Mario CozzolinoSource :
- Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association [ 1460-2385 ] ; 2016.
Abstract
Calcific uraemic arteriolopathy (CUA), or calciphylaxis, is a rare disease predominantly occurring in comorbidity with dialysis. Due to the very low frequency of CUA, prospective studies on its management are lacking and even anecdotal reports on treatment remain scarce. Therefore, calciphylaxis is still a challenging disease with dismal prognosis urgently requiring adequate strategies for diagnosis and treatment.In an attempt to fill some of the current gaps in evidence on various, highly debated and controversial aspects of dialysis-associated calciphylaxis, 13 international experts joined the 1st Consensus Conference on CUA, held in Leuven, Belgium on 21 September 2015. The conference was supported by the European Calciphylaxis Network (EuCalNet), which is a task force of the ERA-EDTA scientific working group on Chronic Kidney Disease-Mineral and Bone Disorders (CKD-MBD). After an intense discussion, a 9-point Likert scale questionnaire regarding 20 items on calciphylaxis was anonymously answered by each participant. These 20 items addressed unsolved issues in terms of diagnosis and management of calciphylaxis. On the one hand, the analysis of the expert opinions identified areas of general consensus, which might be a valuable aid for physicians treating such a disease with less experience in the field. On the other hand, some topics such as the pertinence of skin biopsy and administration of certain treatments revealed divergent opinions. The aim of the present summary report is to provide some guidance for clinicians who face patients with calciphylaxis in the current setting of absence of evidence-based medicine.
DOI: 10.1093/ndt/gfw025
PubMed: 27005994
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Lack of evidence does not justify neglect: how can we address unmet medical needs in calciphylaxis?</title><author><name sortKey="Brandenburg, Vincent M" sort="Brandenburg, Vincent M" uniqKey="Brandenburg V" first="Vincent M" last="Brandenburg">Vincent M. Brandenburg</name><affiliation><nlm:affiliation>Department of Cardiology, University Hospital RWTH Aachen, Aachen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Evenepoel, Pieter" sort="Evenepoel, Pieter" uniqKey="Evenepoel P" first="Pieter" last="Evenepoel">Pieter Evenepoel</name><affiliation><nlm:affiliation>Department of Internal Medicine, Division of Nephrology, University Hospitals Leuven, Leuven, Belgium.</nlm:affiliation></affiliation></author><author><name sortKey="Floege, Jurgen" sort="Floege, Jurgen" uniqKey="Floege J" first="Jürgen" last="Floege">Jürgen Floege</name><affiliation><nlm:affiliation>Department of Nephrology, RWTH University of Aachen, Aachen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Goldsmith, David" sort="Goldsmith, David" uniqKey="Goldsmith D" first="David" last="Goldsmith">David Goldsmith</name><affiliation><nlm:affiliation>Renal and Transplantation Department, Guy's and St Thomas' Hospitals, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Kramann, Rafael" sort="Kramann, Rafael" uniqKey="Kramann R" first="Rafael" last="Kramann">Rafael Kramann</name><affiliation><nlm:affiliation>Department of Nephrology, RWTH University of Aachen, Aachen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Massy, Ziad" sort="Massy, Ziad" uniqKey="Massy Z" first="Ziad" last="Massy">Ziad Massy</name><affiliation><nlm:affiliation>Division of Nephrology, Ambroise Paré University Hospital, APHP, University of Paris Ouest-Versailles-St-Quentin-en-Yvelines (UVSQ), Boulogne-Billancourt, Paris INSERM U1018, Research Centre in Epidemiology and Population Health (CESP) Team 5, Villejuif, France F-CRIN-INI-CRCT, Nancy, France.</nlm:affiliation></affiliation></author><author><name sortKey="Mazzaferro, Sandro" sort="Mazzaferro, Sandro" uniqKey="Mazzaferro S" first="Sandro" last="Mazzaferro">Sandro Mazzaferro</name><affiliation><nlm:affiliation>Department of Cardiovascular, Respiratory, Nephrologic, Geriatric Sciences, Sapienza University of Rome, Rome, Italy.</nlm:affiliation></affiliation></author><author><name sortKey="Schurgers, Leon J" sort="Schurgers, Leon J" uniqKey="Schurgers L" first="Leon J" last="Schurgers">Leon J. Schurgers</name><affiliation><nlm:affiliation>Department of Biochemistry, Faculty of Medicine, Health and Life Science, Maastricht, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Sinha, Smeeta" sort="Sinha, Smeeta" uniqKey="Sinha S" first="Smeeta" last="Sinha">Smeeta Sinha</name><affiliation><nlm:affiliation>Department of Renal Medicine, Manchester Academic Health Sciences Centre, Salford Royal NHS Foundation Trust, Salford, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Torregrosa, Vicens" sort="Torregrosa, Vicens" uniqKey="Torregrosa V" first="Vicens" last="Torregrosa">Vicens Torregrosa</name><affiliation><nlm:affiliation>Nephrology and Renal Transplantation Department, Hospital Clinic, University of Barcelona, Barcelona, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Ure A Torres, Pablo" sort="Ure A Torres, Pablo" uniqKey="Ure A Torres P" first="Pablo" last="Ure A-Torres">Pablo Ure A-Torres</name><affiliation><nlm:affiliation>Department of Nephrology and Dialysis, Clinique du Landy, Saint-Ouen, France Department of Renal Physiology, Necker Hospital, University of Paris Descartes, Paris, France.</nlm:affiliation></affiliation></author><author><name sortKey="Vervloet, Marc" sort="Vervloet, Marc" uniqKey="Vervloet M" first="Marc" last="Vervloet">Marc Vervloet</name><affiliation><nlm:affiliation>Department of Nephrology, VU University Medical Center, Amsterdam, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Cozzolino, Mario" sort="Cozzolino, Mario" uniqKey="Cozzolino M" first="Mario" last="Cozzolino">Mario Cozzolino</name><affiliation><nlm:affiliation>Department of Health Sciences, University of Milan, Renal Division, San Paolo Hospital, Milan, Italy.</nlm:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2016">2016</date><idno type="doi">10.1093/ndt/gfw025</idno><idno type="RBID">pubmed:27005994</idno><idno type="pmid">27005994</idno><idno type="wicri:Area/PubMed/Corpus">000011</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000011</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Lack of evidence does not justify neglect: how can we address unmet medical needs in calciphylaxis?</title><author><name sortKey="Brandenburg, Vincent M" sort="Brandenburg, Vincent M" uniqKey="Brandenburg V" first="Vincent M" last="Brandenburg">Vincent M. Brandenburg</name><affiliation><nlm:affiliation>Department of Cardiology, University Hospital RWTH Aachen, Aachen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Evenepoel, Pieter" sort="Evenepoel, Pieter" uniqKey="Evenepoel P" first="Pieter" last="Evenepoel">Pieter Evenepoel</name><affiliation><nlm:affiliation>Department of Internal Medicine, Division of Nephrology, University Hospitals Leuven, Leuven, Belgium.</nlm:affiliation></affiliation></author><author><name sortKey="Floege, Jurgen" sort="Floege, Jurgen" uniqKey="Floege J" first="Jürgen" last="Floege">Jürgen Floege</name><affiliation><nlm:affiliation>Department of Nephrology, RWTH University of Aachen, Aachen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Goldsmith, David" sort="Goldsmith, David" uniqKey="Goldsmith D" first="David" last="Goldsmith">David Goldsmith</name><affiliation><nlm:affiliation>Renal and Transplantation Department, Guy's and St Thomas' Hospitals, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Kramann, Rafael" sort="Kramann, Rafael" uniqKey="Kramann R" first="Rafael" last="Kramann">Rafael Kramann</name><affiliation><nlm:affiliation>Department of Nephrology, RWTH University of Aachen, Aachen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Massy, Ziad" sort="Massy, Ziad" uniqKey="Massy Z" first="Ziad" last="Massy">Ziad Massy</name><affiliation><nlm:affiliation>Division of Nephrology, Ambroise Paré University Hospital, APHP, University of Paris Ouest-Versailles-St-Quentin-en-Yvelines (UVSQ), Boulogne-Billancourt, Paris INSERM U1018, Research Centre in Epidemiology and Population Health (CESP) Team 5, Villejuif, France F-CRIN-INI-CRCT, Nancy, France.</nlm:affiliation></affiliation></author><author><name sortKey="Mazzaferro, Sandro" sort="Mazzaferro, Sandro" uniqKey="Mazzaferro S" first="Sandro" last="Mazzaferro">Sandro Mazzaferro</name><affiliation><nlm:affiliation>Department of Cardiovascular, Respiratory, Nephrologic, Geriatric Sciences, Sapienza University of Rome, Rome, Italy.</nlm:affiliation></affiliation></author><author><name sortKey="Schurgers, Leon J" sort="Schurgers, Leon J" uniqKey="Schurgers L" first="Leon J" last="Schurgers">Leon J. Schurgers</name><affiliation><nlm:affiliation>Department of Biochemistry, Faculty of Medicine, Health and Life Science, Maastricht, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Sinha, Smeeta" sort="Sinha, Smeeta" uniqKey="Sinha S" first="Smeeta" last="Sinha">Smeeta Sinha</name><affiliation><nlm:affiliation>Department of Renal Medicine, Manchester Academic Health Sciences Centre, Salford Royal NHS Foundation Trust, Salford, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Torregrosa, Vicens" sort="Torregrosa, Vicens" uniqKey="Torregrosa V" first="Vicens" last="Torregrosa">Vicens Torregrosa</name><affiliation><nlm:affiliation>Nephrology and Renal Transplantation Department, Hospital Clinic, University of Barcelona, Barcelona, Spain.</nlm:affiliation></affiliation></author><author><name sortKey="Ure A Torres, Pablo" sort="Ure A Torres, Pablo" uniqKey="Ure A Torres P" first="Pablo" last="Ure A-Torres">Pablo Ure A-Torres</name><affiliation><nlm:affiliation>Department of Nephrology and Dialysis, Clinique du Landy, Saint-Ouen, France Department of Renal Physiology, Necker Hospital, University of Paris Descartes, Paris, France.</nlm:affiliation></affiliation></author><author><name sortKey="Vervloet, Marc" sort="Vervloet, Marc" uniqKey="Vervloet M" first="Marc" last="Vervloet">Marc Vervloet</name><affiliation><nlm:affiliation>Department of Nephrology, VU University Medical Center, Amsterdam, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Cozzolino, Mario" sort="Cozzolino, Mario" uniqKey="Cozzolino M" first="Mario" last="Cozzolino">Mario Cozzolino</name><affiliation><nlm:affiliation>Department of Health Sciences, University of Milan, Renal Division, San Paolo Hospital, Milan, Italy.</nlm:affiliation></affiliation></author></analytic><series><title level="j">Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association</title><idno type="eISSN">1460-2385</idno><imprint><date when="2016" type="published">2016</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Calcific uraemic arteriolopathy (CUA), or calciphylaxis, is a rare disease predominantly occurring in comorbidity with dialysis. Due to the very low frequency of CUA, prospective studies on its management are lacking and even anecdotal reports on treatment remain scarce. Therefore, calciphylaxis is still a challenging disease with dismal prognosis urgently requiring adequate strategies for diagnosis and treatment.In an attempt to fill some of the current gaps in evidence on various, highly debated and controversial aspects of dialysis-associated calciphylaxis, 13 international experts joined the 1st Consensus Conference on CUA, held in Leuven, Belgium on 21 September 2015. The conference was supported by the European Calciphylaxis Network (EuCalNet), which is a task force of the ERA-EDTA scientific working group on Chronic Kidney Disease-Mineral and Bone Disorders (CKD-MBD). After an intense discussion, a 9-point Likert scale questionnaire regarding 20 items on calciphylaxis was anonymously answered by each participant. These 20 items addressed unsolved issues in terms of diagnosis and management of calciphylaxis. On the one hand, the analysis of the expert opinions identified areas of general consensus, which might be a valuable aid for physicians treating such a disease with less experience in the field. On the other hand, some topics such as the pertinence of skin biopsy and administration of certain treatments revealed divergent opinions. The aim of the present summary report is to provide some guidance for clinicians who face patients with calciphylaxis in the current setting of absence of evidence-based medicine.</div></front></TEI><pubmed><MedlineCitation Status="Publisher" Owner="NLM"><PMID Version="1">27005994</PMID><DateCreated><Year>2016</Year><Month>3</Month><Day>23</Day></DateCreated><DateRevised><Year>2016</Year><Month>3</Month><Day>24</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1460-2385</ISSN><JournalIssue CitedMedium="Internet"><PubDate><Year>2016</Year><Month>Mar</Month><Day>22</Day></PubDate></JournalIssue><Title>Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association</Title><ISOAbbreviation>Nephrol. Dial. Transplant.</ISOAbbreviation></Journal><ArticleTitle>Lack of evidence does not justify neglect: how can we address unmet medical needs in calciphylaxis?</ArticleTitle><Pagination><MedlinePgn></MedlinePgn></Pagination><ELocationID EIdType="pii">gfw025</ELocationID><Abstract><AbstractText NlmCategory="UNASSIGNED">Calcific uraemic arteriolopathy (CUA), or calciphylaxis, is a rare disease predominantly occurring in comorbidity with dialysis. Due to the very low frequency of CUA, prospective studies on its management are lacking and even anecdotal reports on treatment remain scarce. Therefore, calciphylaxis is still a challenging disease with dismal prognosis urgently requiring adequate strategies for diagnosis and treatment.In an attempt to fill some of the current gaps in evidence on various, highly debated and controversial aspects of dialysis-associated calciphylaxis, 13 international experts joined the 1st Consensus Conference on CUA, held in Leuven, Belgium on 21 September 2015. The conference was supported by the European Calciphylaxis Network (EuCalNet), which is a task force of the ERA-EDTA scientific working group on Chronic Kidney Disease-Mineral and Bone Disorders (CKD-MBD). After an intense discussion, a 9-point Likert scale questionnaire regarding 20 items on calciphylaxis was anonymously answered by each participant. These 20 items addressed unsolved issues in terms of diagnosis and management of calciphylaxis. On the one hand, the analysis of the expert opinions identified areas of general consensus, which might be a valuable aid for physicians treating such a disease with less experience in the field. On the other hand, some topics such as the pertinence of skin biopsy and administration of certain treatments revealed divergent opinions. The aim of the present summary report is to provide some guidance for clinicians who face patients with calciphylaxis in the current setting of absence of evidence-based medicine.</AbstractText><CopyrightInformation>© The Author 2016. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.</CopyrightInformation></Abstract><AuthorList><Author><LastName>Brandenburg</LastName><ForeName>Vincent M</ForeName><Initials>VM</Initials><AffiliationInfo><Affiliation>Department of Cardiology, University Hospital RWTH Aachen, Aachen, Germany.</Affiliation></AffiliationInfo></Author><Author><LastName>Evenepoel</LastName><ForeName>Pieter</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>Department of Internal Medicine, Division of Nephrology, University Hospitals Leuven, Leuven, Belgium.</Affiliation></AffiliationInfo></Author><Author><LastName>Floege</LastName><ForeName>Jürgen</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Department of Nephrology, RWTH University of Aachen, Aachen, Germany.</Affiliation></AffiliationInfo></Author><Author><LastName>Goldsmith</LastName><ForeName>David</ForeName><Initials>D</Initials><AffiliationInfo><Affiliation>Renal and Transplantation Department, Guy's and St Thomas' Hospitals, London, UK.</Affiliation></AffiliationInfo></Author><Author><LastName>Kramann</LastName><ForeName>Rafael</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Department of Nephrology, RWTH University of Aachen, Aachen, Germany.</Affiliation></AffiliationInfo></Author><Author><LastName>Massy</LastName><ForeName>Ziad</ForeName><Initials>Z</Initials><AffiliationInfo><Affiliation>Division of Nephrology, Ambroise Paré University Hospital, APHP, University of Paris Ouest-Versailles-St-Quentin-en-Yvelines (UVSQ), Boulogne-Billancourt, Paris INSERM U1018, Research Centre in Epidemiology and Population Health (CESP) Team 5, Villejuif, France F-CRIN-INI-CRCT, Nancy, France.</Affiliation></AffiliationInfo></Author><Author><LastName>Mazzaferro</LastName><ForeName>Sandro</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Department of Cardiovascular, Respiratory, Nephrologic, Geriatric Sciences, Sapienza University of Rome, Rome, Italy.</Affiliation></AffiliationInfo></Author><Author><LastName>Schurgers</LastName><ForeName>Leon J</ForeName><Initials>LJ</Initials><AffiliationInfo><Affiliation>Department of Biochemistry, Faculty of Medicine, Health and Life Science, Maastricht, The Netherlands.</Affiliation></AffiliationInfo></Author><Author><LastName>Sinha</LastName><ForeName>Smeeta</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Department of Renal Medicine, Manchester Academic Health Sciences Centre, Salford Royal NHS Foundation Trust, Salford, UK.</Affiliation></AffiliationInfo></Author><Author><LastName>Torregrosa</LastName><ForeName>Vicens</ForeName><Initials>V</Initials><AffiliationInfo><Affiliation>Nephrology and Renal Transplantation Department, Hospital Clinic, University of Barcelona, Barcelona, Spain.</Affiliation></AffiliationInfo></Author><Author><LastName>Ureña-Torres</LastName><ForeName>Pablo</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>Department of Nephrology and Dialysis, Clinique du Landy, Saint-Ouen, France Department of Renal Physiology, Necker Hospital, University of Paris Descartes, Paris, France.</Affiliation></AffiliationInfo></Author><Author><LastName>Vervloet</LastName><ForeName>Marc</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Department of Nephrology, VU University Medical Center, Amsterdam, The Netherlands.</Affiliation></AffiliationInfo></Author><Author><LastName>Cozzolino</LastName><ForeName>Mario</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Department of Health Sciences, University of Milan, Renal Division, San Paolo Hospital, Milan, Italy.</Affiliation></AffiliationInfo></Author><Author><CollectiveName>ERA-EDTA Working Group on CKD-MBD and EUCALNET</CollectiveName></Author></AuthorList><Language>ENG</Language><PublicationTypeList><PublicationType UI="">JOURNAL ARTICLE</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2016</Year><Month>3</Month><Day>22</Day></ArticleDate></Article><MedlineJournalInfo><MedlineTA>Nephrol Dial Transplant</MedlineTA><NlmUniqueID>8706402</NlmUniqueID><ISSNLinking>0931-0509</ISSNLinking></MedlineJournalInfo><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">CKD-MBD</Keyword><Keyword MajorTopicYN="N">calciphylaxis</Keyword><Keyword MajorTopicYN="N">cardiovascular</Keyword><Keyword MajorTopicYN="N">chronic renal failure</Keyword><Keyword MajorTopicYN="N">mineral metabolism</Keyword></KeywordList><InvestigatorList><Investigator><LastName>Bover</LastName><ForeName>Jordi</ForeName><Initials>J</Initials></Investigator><Investigator><LastName>Covic</LastName><ForeName>Adrian</ForeName><Initials>A</Initials></Investigator></InvestigatorList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2015</Year><Month>12</Month><Day>18</Day></PubMedPubDate><PubMedPubDate PubStatus="accepted"><Year>2016</Year><Month>1</Month><Day>27</Day></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2016</Year><Month>3</Month><Day>24</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="pubmed"><Year>2016</Year><Month>3</Month><Day>24</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2016</Year><Month>3</Month><Day>24</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>aheadofprint</PublicationStatus><ArticleIdList><ArticleId IdType="pii">gfw025</ArticleId><ArticleId IdType="doi">10.1093/ndt/gfw025</ArticleId><ArticleId IdType="pubmed">27005994</ArticleId></ArticleIdList></PubmedData></pubmed></record>Pour manipuler ce document sous Unix (Dilib)
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